#thisisJeanine

Intravenous nutrition is the new Duracell, in my opinion. I am a wife, a mum to 2 young ladies and 3 furry boys, and a grandma to two tortoises. I am a doctor, but after 23 years had to medically retire. I try very hard to be defined by what I do and not what is in my medical notes.
 
I have had inflammatory bowel disease since 2010, been on and off enteral nutrition from 2012 and home parenteral nutrition (HPN) since 2016. I did not want to start HPN, I feared it and thought it would be the beginning of the end. I believed it would mean even more restriction, illness and complications. Medical professionals and my research leant towards discussing the risks of HPN, or perhaps that is all I heard. I just saw more loss. Of function, identity, job, health and freedom.
 
The reality, however, couldn’t have been any different. Prior to starting HPN I was very underweight, with a BMI of 13. I was on enteral nutrition at the maximum rate for 24 hours a day. Because I didn’t absorb nutrients, I had no energy. I couldn’t be a mum, enjoy family activities or my own hobbies. I had to give up Taekwondo, running and anything that might use calories. I could barely walk up the stairs in my house. Within a day of starting parenteral nutrition (PN) I felt like I had new batteries. I was like a Duracell bunny. I hadn’t realised how foggy my brain had become until the fog lifted and I had clarity of thought. I had the energy to do things, and remember being so excited that I wanted to, and could, walk up a flight of stairs in the hospital without sitting down halfway. 
 
Once I got home and adjusted to my new regime, I realised that I had been given a second chance at life and I had to make the most of it. I wanted to prove to myself, and in particular my children, that I could do amazing things now that I had the energy to do so and make some amazing memories with my family and friends. I don’t know why, but it was also really important to me to make the most of what PN now allowed me to do as a way of thanks to the medical teams who had given me this amazing gift. I have always two quotes, see images, as they reflect my own thoughts.
 
I have done many crazy (some say stupid!) things and had adventures since having my new batteries! Things. I gained my black belt in Taekwondo on one Saturday and ran the London Marathon the next day with a bag of PN in a rucksack on my back. I walked 105km from London to Brighton in 20 hours and 100km along the Thames Path in 19 hours, both attached to PN. I even walked a 100km event round and round my garden whilst shielding. I have been horse riding, thrown myself out of an aeroplane, canoed along the Dordogne River and cycled in the snow (e-bikes are amazing by the way!).
 
I have been told my body is much more resilient to illness now, as I am much fitter and stronger. My emotional wellbeing is also in a far better place, with less despair and negativity.
 
Holidays at home and abroad are also possible with good preparation and many lists. My first expedition abroad was to New York and since then I have been lucky enough to visit many places including the Outer Hebrides, St Lucia, Santorini, Cyprus and the Norwegian Fjords. My advice to those of you yet to try is to start small. Do a few breaks close to home. Then perhaps a weekend city break in Europe and then further afield. Organisation is key, lots of lists and holiday insurance.
 
Life now isn’t without complications though. Being on PN does come with risks in addition to your underlying condition. I would say in my case they are less now that I am well-nourished, and I bounce back much more quickly. As a result, I have had to adapt what I do. I had to stop running due to a pelvic stress fracture from years of poor nutrition and lots of steroids, so I took up long-distance walking. I have had to cancel many things due to being in hospital. I have times where I cannot do anything physically demanding so I took up cake decorating and piano playing. I also started showing my puppy and we qualified for Crufts, where he came second in his class and has since qualified for Crufts for life. I have had complications both from IBD but also related to PN, but I am in a better place physically and mentally to deal with it. 
 
All the things I have done have been okayed by the medical teams I have been under. I am so grateful to them. They have been and continue to be amazing. They have encouraged me, given me letters, increased my calories where necessary, arranged race day bags of PN and most importantly had a ‘can do’ attitude. My side of the bargain is not asking them for the impossible and being careful, mitigating risk in the things I do.
 
My top tips. There are risks to HPN, but there are also huge benefits. Ask your team about hobbies you would like to restart and how they can facilitate this, e.g. swimming or travelling. They don’t have to be energetic, just something you can enjoy. Social media can be great, but don’t get dragged down by the negative stories you may read; seek out positivity for balance.
 
A final word about hope. The greatest gift that PN has given me is hope. Hope that my life can be as full as I can make it.
 
Research has shown that “hope can promote confidence, empowerment and resilience. When we believe that our personal actions and abilities can expand and are not fixed, our performance and ability to respond to life’s challenges can improve.” “Hope is also linked to greater emotional and physical wellbeing, positive relationships, productivity, goal setting, achievement, and performance.”
 
So has my journey with HPN been worth it? Absolutely. What’s next? I may have a few cunning plans up my sleeve!